Monday, December 2, 2013

"Break Barriers, Open Doors: for an inclusive society and development for all."

United Nations Enable has called for us to organize, to "hold forums, public discussions and information campaigns to help find innovative ways and means by which persons with disabilities and their families can be further integrated into their societies and development plans."

Who am I to argue with the UN?

So I figure I should try to contribute to breaking a barrier that has been, almost visibly, forming in front of me and my family the further I've delved into intersectionality, Critical Disability Studies, neurodiversity, and crossdisability efforts in regards to Disability Justice.

Yes. I've gone and lost myself in theory again, but this time I've kept praxis right there, implementation at the ready, so as to not forget why I'm clicking on yet another link or swiping to turn one more page.

And I'm wondering where my kid fits in. The adorable toddler with the intellectual disability. I'm having an increasingly difficult time figuring out what access and accessibility - possibly the most important terms in Disability Justice - will mean for her in the future, and for her future. What will it take for society to become accessible for her as well? What will an accessible society look like when it's also a society that fully and meaningfully includes those with intellectual disabilities? How will it function? What means will my kid need to use to secure access? Will anyone fight for her and will she be included in the fights for others?

What and who is actually meant when access is being discussed?

Because it has become clear that access is the truest, purest form of inclusion; access to economic capital, to movement, to social capital, to education, to cultural capital, to relationships, to development, and to communication. Really, to life, as we able-bodied and neurotypical understand the concept, in a way that is not granted briefly by a fickle entity but that is put in place in systemic design in such a way that society cannot but function for everyone.

All too often inclusion is understood and portrayed as brief forays into 'normalcy', the mainstream, or into the existence of those who are privileged - "He calls his friends to make sure they're picking him up, he's making sure they're being inclusive of him," or "I saw my daughter chat with some girls as I came to pick her up from school, that's real inclusion." - resulting in a skewed view. Too often, what in fact is being discussed is regular human interaction, irrespective of the "disability context" and simply routed through jargon of disability. Being friends with someone who has a disability isn't "being inclusive", it's having a friend. A society that is accessible in all areas for everyone is a society that will guarantee the potential, value the existence but disregard the 'saintliness' value in and of all kinds of meaningful relationships, so that there is no "being inclusive" as a possible (saintly, compassionate) behavior nor "being included" as a gift bestowed upon someone categorically 'too different', but instead a playing field that looks equally bumpy and flat from all sides, and that facilitates and fosters human interaction. You know, kind of like how society currently works for those of us who are able-bodied and neurotypical and/ or otherwise privileged, only without the possibility of that collection of 'active deeds of acceptance' some of us keep and many of us need to ward off the "evil' in our hearts.

From theory to praxis? This one is easy, just requires some thought.

I may sound like an optimist but I'm not. I simply feel that expecting compassion as a basis for interaction just because two people aren't exactly the same is a little, alright a lot, far off, especially since most of us are equipped with the capacity for empathy, or at least the crude mechanism. We are all human after all, so let's just be human to each other, without expecting pats on the back (or giving them unnecessarily for simply doing what's decent and human). No embedded value hierarchy needed. That just works to dig a hole deeper.

Still, back to the barrier. Is there a fight for a society where access is the norm for people with intellectual disabilities also, or are we still stuck on a basic kind of inclusion? Inclusion that relies on the goodness of people in order to happen, on compassion towards "those less fortunate", instead of access and accessibility as equality. Are we stuck on "too different?" Are we tacitly looking for qualifiers and justifiers vis-a-vis a cultural notion of accomplishment, or worse yet, perceiving only as a symbol devoid of agency? Are we perhaps, even in the area of Disability Rights and Disability Justice, focused on a culturally constrained and implicitly agreed upon, via minus two, sometimes more, standard deviations, "lack of" intellect or intelligence as a criterion best avoided or glossed over as far as intersectionality or neurodiversity go? Is it because the voice is not strong or many yet?

Where does my kid fit in? Does she have access into the group of people who fight for access or will she forever be at the mercy of someone's compassion? She has agency - believe me, she does, the loud kind - but does she have comrades too, and will they fight for her until she is old and aware enough to fight for herself and others?

Monday, October 28, 2013

During this month of awareness about Down syndrome many of the better pieces of advocacy (note: not awareness) I've read have been about unique humans, about being and becoming oneself, about difference within similarity, and about individuality. As an antidote to the homogenizing rhetoric, sweeping generalizations, and the unfairness that is the stereotyping all too ubiquitous, this is good. This shift in rhetoric when talking about people with Down syndrome is getting us closer to finding true acceptance into the ranks of unmarginalized humans for people who happen to have Down syndrome.

But what makes people with Down syndrome unique? What makes a person who they are, a one of a kind? What makes a person different? What makes them an individual?

The short answer that suits my purposes for this post, to all of those questions, and the point I intend to make, is that it is NOT the number of chromosomes in a person's cells.

Having Down syndrome does not make a person unique, or extraordinary, any more than having strong fingernails, or a high intelligence quotient does.

Having "an extra chromosome" (are you as tired of this expression as I am? I hope so. It's not extra, it's a third 21st) will not mean one is a 'daisy in a sea of poppies', it doesn't mean I, as a parent to someone with Ds, suddenly found myself vacationing in Holland when I thought I was on my way to Italy. I've actually permanently relocated to a different planet altogether, called parenthood, and I understand that on this planet no one has an identical cottage-pod to ours, there are monsters - big, small, many, or few - in everyone's backyard, and happiness comes in many forms.

So.

Having Down syndrome makes a person roughly 1 in 6 million*. Much like my specific nationality makes me 1 in 6 million**.

My nationality is part of my identity, but it's far from what makes me unique. It's only a tiny part of my identity in my everyday life, and only sometimes do I let it swell to a size that others can recognize. Lately really mainly when excellent school systems in the world are discussed. At those points, I'm a FINN. Sometimes I use it to add to my quirkiness, other times I use it to almost justify my actions. But however I choose to utilize this piece of my inner being, the fact remains that I choose how I project my identity out into the world.

While I can't say how my daughter feels about her Down syndrome as part of her identity - she's a toddler, I doubt she knows what Ds is, most times I doubt she knows what a hippopotamus is, let alone something as interesting to a 2-year-old as identity - I'm pretty sure she'd rather not be just Down syndrome. In every single encounter ever, or even most. I'm just guessing here, but like most people I know, she'll likely grow up to embrace and reject, ignore and include, in ever-fluctuating ways, all of the varying facets of her specific humanness at her disposal.

Not facets under an overarching umbrella of Down syndrome.

She might grow up proud to be a Finn, a Dane, or a Mexican, all of those elements of an identity being at her disposal. She might mesh the three. She might embrace her multilingualism or reject it and prefer one language over the others. She could wish to have brown eyes and curly hair or delight in her wispy locks and blue eyes, or she might change her opinion on her looks on a daily basis. She might be quick to speak her mind or prefer to stay silent, observing. She might find herself feeling naked without her glasses or think that they're too much of a hassle. She might want for people to think of her as an artist, an athlete, a regular Joan (or a Joe, or, well, person), or nothing even remotely like that. There might be times her having Down syndrome could come in as an important unifying facet, and times she'd wish it away from under the gaze and awareness of her surroundings.

I can't know until she tells me. Neither can anyone else.

There could be and will be an infinite number of things, facets, parts, shards, elements, traits, ingredients, qualities, and more that will play into what makes her unique. Not in the least the perception of another person. The interaction. The dance. In tiny ways we are born anew in each interaction. This is not news, but that this is just as true in the case of a person with Down syndrome, to many, just might be.

She will not be unique because she has Down syndrome, she will be unique because of how everything she is composed of comes together, shifts, reflects, and intertwines, with Down syndrome in the mix, one ingredient.

She is not the real her "underneath that extra chromosome."

When people say that they hate Down syndrome but love their child fiercely I find myself unable to relate, unable to even understand. I know that when they say this they're saying this out of concern, frustration, or fear, but I wish they'd understand that it isn't really Down syndrome they hate, it is the society that continuously works to disable a person with Down syndrome, beginning with what follows after some milestones are not met in a timely manner all the way to expecting proof of worth and humanity rather than regarding those as the starting point they are.

It would make me immensely sad had my parents hated the fact that I was born a girl. When I was born they understood that being born a girl in the society that I was born in at the time I was born meant that I would never be awarded quite the same possibilities, opportunities, or respect as a boy would, while more restraint and respect would be demanded of me simply because of my gender. They knew that I and them would have to fight harder for me to have what I deserved for being human and that they would have to attempt to change the way that the society worked, but they didn't for one second hate the fact that I would one day be a woman and not a man.

Because that would have been the same as hating me.

I don't hate Down syndrome. I don't hate my child.

Not a photo of my kid.

* I realize that estimates of the global number of individuals with Ds vary. I'm cool with this number for now though. Multiple sources and all that.** I'm a Finn. There's a register. We're organized </stereotypefont>.

Tuesday, October 22, 2013

I'm not someone regularly referred to as an 'older' parent and neither is the Viking, but we did manage to spend ten whole years of married life before we ever seriously considered becoming biological parents. There were times that I thought that motherhood wasn't in the cards for me and other times of rather serious contemplation of adoption, eventually foiled by our respective nationalities combined with our nomadic lifestyle, or the child's existing familial ties. We had discussed parenthood, of course, but much in the same way we had discussed any potential countries we might spend a few years in. A possibility, something to ponder, a new avenue, but not a must nor an inevitability.

Much along the lines of "But how will becoming parents affect us?"

Oh how off track can one be? Affect us? How about what is it going to be like for the progeny?

However, after ten years, somewhat on a whim after some lifestyle alterations, we decided to give it a go. To see whether a pregnancy would take. And promptly conceived on the first try. Because - of course. Quite an unexpected outcome. Took us 16 store-bought pregnancy tests and one blood draw at the doctor's to believe the news, and quite a bit of blind faith in nature doing its thing to keep believing it. Finally, largely due to this nature's attempts at trying our faith in the pregnancy we quickly found out that our daughter would have Trisomy 21.

Blip.

So I've never not accepted the diagnosis. We've never not accepted the diagnosis. It was never really a surprise or a shock. There was no grief or mourning. My being pregnant on the first try, on the other hand, was earth shattering. Exhilarating yet scary. Life- and direction-altering. After the beginning of the pregnancy, us learning that it might be possible that a live little being would be at the end of this thing, well, that was almost incomprehensible.

HYPERDRIVE. I REPEAT: PREPARE FOR HYPERDRIVE.

Down syndrome was a blip on the radar that altered the potential directions in the minutest of ways, while the overall direction stayed the same - to boldly go where much more is expected from you (mostly by yourself) than you ever realized - bravely into parenthood. A new yet permanent territory completely void of exits.

And I wondered. What would it take to be a good parent, a good provider, a good mother. What would I need to know and do to make it in this new place. How could I be the kind of parent my daughter could accept. The kind of parent she could look at when she's all grown up and think "My mother may be loud and obnoxious and not nearly as funny as she seems to think, but man, I lucked out. She loved me and laughed with me, took care of me, and brought me up to be someone I can be proud of."

That's what I still reflect on. Constantly. How I can be the best mom for my kid. How I can make it so that she can grow to be the kind of person she wants to be. How I can make it so that she can make her own choices, make them well, and make them so that they make her happy and her life good. How I can help her grow into her own person.

I anguish, and I know I don't know, but I accept that, and can only try to see things from her point of view.

I can't see yet how she feels about Down syndrome, how she feels about having it, and I can't even begin to guess how she'll feel about it or having it in the future. No one can. What I can see clearly, however, are the systemic injustices that currently await her because of her Down syndrome. I can see the oppression, the Othering, the segregation, the mystification, dehumanization, and the reductionism in perpetuating stereotypes, the lack of supports and access, the prejudice, the discrimination, and the hatred she'll face because of her Down syndrome.

I can see the ways in which the world finds her unacceptable because of her genetic condition.

But I don't have to take it. I don't have to accept it. I can fight it. Because if I don't I won't be the kind of mother she deserves.

Thursday, October 3, 2013

What is raising awareness? Is it asking people to realize that something exists? Is it factual information? Is it trying to wake people up to the reality around them? Or does it carry with it the connotation that there is something one should be aware of so that it doesn't sneak up on one, so that one is not, let's say, affected by a condition?

Lately, I've been having an increasingly difficult time with seeing raising awareness as something that results in a purely positive outcome. It is no longer enough for me to say that we need to move on from awareness, that awareness is fine and all, but that we need to do more. Now I have to go and question the whole idea of 'raising awareness' too. But then again, that's what I do: I can't just, for the sake of Frank and all of his penguin minions, accept things for what they are - good and pure and nice and not meant like that. </sarcasmfont>

I always have to dig, wonder, question, and reflect.

Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.

But October is Down Syndrome Awareness month. There will be many people who will be especially vocal about Down syndrome, many bloggers who will be doing a blogging prompt called 31 for 21, which essentially means that they'll be writing a post to raise awareness about Down syndrome every day of the month of October. I wish I had that kind of blogging energy or the inspiration, but there just isn't enough coffee or wine in this world for me to blog every day (also, there may be too much good stuff to read to actually produce any stuff of my own). I own that. Last year I managed one post. This year I'm not even going to preface this post with a bunch of excuses. You all know I spend a lot of time just sittingchasing a wily toddlerdrinkingthinkingnot cookingreadingdoinglaundryresetting and degooifying the 'puter, the iPad, my phone, and the DVR living and being generally a big wet blanket, right?

I'm excused and can just harp from the sidelines. Awesome.

There will be many, many posts about Down syndrome. Countless cute, some not so cute, and maybe a few 'educational' photos. Lots of talk and stories, and the like. Plenty of dispelling of false or antiquated beliefs and completely wrong information. Some complaints. Many funny anecdotes and observations. Some facts, many should-be-but-maybe-not-exactly-are-facts, and perhaps a few beliefs and observations masquerading as facts. Still, lots of good, lots of community, and lots of love.

Love is always nice. Isn't it just?

But sometimes we I have to be contrary. Sometimes I have to embrace my anger at the society as a valuable tool, turn it into outrage, and challenge the very things I apparently should not be questioning. Because if things make us feel good, help us get by, or help to keep the boat from rocking, if they make us feel like "we're all in this together," they are beyond reproach. Huh? And questioning ideas written in stone as far as Down syndrome goes would just be mean and divisive and not beneficial to the cause.

It could fuck with the kumbaya.

Yeah. There'll be things in this month of blogging I want no part of. Because raising awareness - especially when this 'raising awareness' opens the door to pretty much anything one wishes to say about whatever that awareness is being raised about - does not necessarily promote meaningful inclusion, acceptance, or equal rights. Which, incidentally are thecause I'm interested in.

Awareness does not necessarily lead to acceptance. Ideally it does, but ideally I'd also be blogging every day this month to a receptive audience, and always have the sun shine when I need to get across the Target parking lot with a toddler and a couple dozen pounds of Halloween candy. And ideally I'd have no desire to eat said candy. Ideally my kid would just stick with saying the "no" when she doesn't want to eat something and skip the grand display of 'here, this is how much I will not eat this crap and will instead place it in your lap, on the chair, and on the floor'. Ideally.

But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.

Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds the Other, and worse yet, people with Ds a unified, homogeneous group Other. Awareness of a condition can lead to the idea that people with the condition need to be handled or dealt with in a certain way, differently from those without the condition, and potentially to the notion of differing expectations of the people with the condition. Raising awareness about Down syndrome, the genetic condition, can easily chip away at the individuality of a person with Down syndrome, the people who have this genetic condition, by drawing on generalizations and sometimes even stereotypes, and by linking the condition with a person's identity to such an extent that the person's other identities will always take the backseat, if the observer is even willing to entertain identities beyond 'a Down syndrome person' to begin with. In reality, any awareness about Down syndrome focusing on anything specific (I use this word while understanding that there is nothing purely specific to Trisomy 21) regarding Down syndrome will naturally work to Other people with Down syndrome for the unaffected observer. Awareness can erode individual personhood by zeroing in on perceived commonalities and differences from the 'general populace' in a way that directly and simply links them to that triplicate of the 21st, instead of making all of the necessary connections, such as the connections to and considerations of intellectual ability, gender, upbringing, nationality, daily routine, age, height, placement in the order of siblings, religion, genetic makeup, ethnicity, social circles, hair color, education, physical ability, disposition, and countless, countless, other outside factors. I say 'outside', because the importance we attach to any of these factors, including one's chromosome count, comes from the 'outside', the social constructs at work in our environment.

My child does not enjoy music because she has Down syndrome. She enjoys music because she has existed since before her birth constantly listening to it, because I enjoy music, because she's been enrolled in music classes since she was 6 months old, because I sing to her, because her father sings to her, because her grandparents sing to her, because if I run out of avenues to entertain her I put on Baby Signing Time - the ones with all of the songs, because she sees that music makes the people around her happy and content and it's part of the celebration in our lives. Yes, the love of music is in her genes too, but she doesn't enjoy it because she has a third copy of the 21st chromosome.

Notice the difference?

Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions slightly more prevalent in the population with Ds to complex behavioral patterns directly linked to the chromosome, insidiously enforcing Othering and, in the worst case scenario, allowing for medical professionals, far too quickly, to brush off valid medical issues that need attending to with "We often see this in Down syndrome," and simply resort to awareness instead of taking action (See what I'm doing here, making too simplistic a connection, a connection that kind of sounds like it fits and in a way it does, but when you really think about it hides behind it a much more intricate process?)

Granted, this looking at perceived commonalities can make us parents of individuals with Ds feel safe and secure in shared experience, but is it really worth it? Do I need 'support' and 'community' more than I need for the world to accept my child as is, without a laundry list of 'Associated with Down Syndrome'? Do I crave similarity and things made simple more than I do the adventure and acceptance of the unknown that is the individual life I lead? In reality, Down syndrome is not even a syndrome. It's a genetic variant called Trisomy 21, not a group of co-occurring symptoms. The symptoms of Down syndrome are after all such horrifying inflictions as a single palmar crease, epicanthic folds, impaired intellect, and other life-threatening abnormalities, none of which are present, ever, in the general population, but are always, always present in Down syndrome. There really should be a pill, you know.

Excuse me while I scream in frustration. Having to be that facetious and liberal with italics does that to a person, you know.

(There would be a really cool gif right here of someone notorious screaming, right after rolling their eyes, if I were able to create one. Or understood what gifs are, really. Next century, I swear.)

I like a nice community feeling, of course I do. Do I believe that having Down syndrome should naturally lead to membership in a community, a tribe? Is there anything so specific about Down syndrome that my child needs to have others in her life who also have Down syndrome, have a doll that has Down syndrome, or have her parents associate with other parents of children with Down syndrome? No. I do believe that there may come a time that my child will enjoy having friends who also have an intellectual disability, and/or will have a hard time keeping friends who do not have an intellectual disability, yes, but that doesn't have anything to do with Down syndrome specifically. There may also come a time that she will not want to play with some kids because they're not into playing 'zoo' or building with legos, and there might come a time she won't want to hang out with someone because all they speak about is the crappy music of the latest Justin Bieber, and, well, there's just more to life than tween pop.

I'll let her find her own way.

Ideally, I'd like to have her find it without having a certain type of awareness hanging over her head while she's trying to go up and talk to a kid, sign 'play', and then rip a ball right out of that kid's hands like that's what it means to share (true story, y'all). In the future, she might not always fit in because of how our society treats people with intellectual disabilities, but because of her Down syndrome? Only if we let it become synonymous with her identity.

Ideally, I'd like to be a part of a larger disability community as an ally. A community which unites because of how the 'able' population in society view and treat their disabled fellow humans, not because I'm interested in romanticizing the extra chromosome in my daughter's cells. A community that doesn't commiserate and isn't heavy handed with honey (and fundraising) when in fact vinegar is called for.

So while I celebrate my child in this month of October, it being her birthday month and all, and in all the other months, and while I have no problem whatsoever with Down syndrome in general, and my kid's Down syndrome which I wouldn't wish away in a million years, specifically, I wish we were part of a community that comes together as a resistance formed because of the segregation and oppression of those with Down syndrome, not a community that unwittingly sometimes contributes to the Othering of my child and others like her (See what I did there? That's how easily we slip and begin sliding...).

Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.

Monday, July 29, 2013

I love this article by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere?

For me it all comes down to acceptance, meaningful inclusion, and equality.

None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.

We need vision.

So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout.

It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.

I don't want to only focus on the haters and the trolls, I want us to sway those who lazily vacillate, those who have good intentions, and those who just don't know any better. I want to scream our vision the loudest. To make it the all-encompassing truth, the reality, the now.

I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for reductionism for inspiration's sake because it is the lesser of two evils.

In my vision the evil trolls will be recognized as the minority they are. Those closeted sociopaths. I'm not so worried about that anonymous, faceless person who spews his or her vitriol in an online comment to an article about a person with a disability. I'm more worried about my kid's future teacher, her friend's mother, my neighbor, and that guy who packs my groceries. I worry that they won't really believe in inclusion because they haven't experienced it, that they won't see it as the most logical thing to do because no one's told them that it is.

I don't worry so much about hate as I do lazy ignorance. I don't worry so much about someone blowing off steam, than I do those minds who've never even really thought about people with Down syndrome or other disabilities as fellow human beings, because they're so used to understanding 'able is normal' as a fundamental fact, just because it gets insidiously reinforced at every turn. I worry about those who perceive people who are disabled as inspirational, marginal, apart, similar amongst themselves, and here on earth for purposes external to themselves, purposes other than living their individual lives. A perceived unity of the experience of disability concerns me.

Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.

We have an audience.

We can set targets all we want and meet them, but unless we actively work to redefine the rhetoric - the way most people view disability and especially intellectual disability, language and all - we'll always have new targets, new ways of oppression, and the fight will never end. We can't just tackle the immediate, we need to reconstruct the foundation. Sometimes that involves peering inwards too, at our own world view and thinking. It has very much meant that for me, at least.

There is a lot of discussion about being united and unified in our efforts, but how can we? We don't agree. For me there are things that simply cannot coexist if an ableist way of thinking is to be dismantled.

I can't be all "accept my kid as is, but in case you do figure out how to suck that extra chromosome right out of her very cells, please call us, we're interested." You can't say "my child deserves to be included in everything her peers are, but you know, if she gets bullied or we feel she's getting frustrated with learning math, relocate her into a nice self-contained location, for her own sake." We can never say "achievements and normalcy are arbitrary social constructs and we need to understand that, but hey, more therapies to help my struggling child the better, before she falls too far behind her peers."

I will have to constantly examine my own thinking, my own language. Will it be my child who is frustrated, unhappy, struggling, or will it be me? Am I fixing my child for the world instead of the world for my child? When did a life of achievements become the life?

We have to turn the tables.

We have to say "There is no discussion. Inclusion has to be a fact as it is a practice that benefits all. Inclusion is the natural state of things. Through inclusion everyone's experience, everyone's life will be just that much more normal (pun very much intended), and everyone will be accepted as a member of the human race and society, with whatever that entails, attempts at peaceful coexistence and conditional love."

We can't try to sell or market disability: "please accept my kid, she is not just a useless eater, she can do all of these things." Doing things isn't a precursor to humanity, being human is. We can't mystify or romanticize the chromosome and ascribe to it some specific, sometimes even supernatural-sounding traits or abilities: "Looksee here, that chromosome's special, if we eradicate it, we eradicate our pathway to the mysteries of cancer treatments or Alzheimer's." Three copies of the 21st chromosome are a part of 6 million people worldwide, and that should be enough to warrant general scientific interest. Or at least I'm going to act as if it is.

I will believe it and live it.

Disability is natural. Down syndrome is natural. It's about time everyone knew.

******************************

Participating in the Down Wit Dat blog hop themed 'Autistic History Month' so really stretching (ignoring) the definition, but apparently 'advocacy' posts are welcome too. Maybe? This post sort of brushes on rethinking the world, which Autistic History Month is essentially about in its wish to write into history those previously ignored and rewrite the faulty parts. No?

Thursday, July 18, 2013

I think lately the premise of this blog has been to sort out what it really is that I'm shouting so loudly for here, elsewhere on the internet, and in real life, what it is that I feel the need to get out there, and what has and continues to grate me about where we are currently. I have been mulling over what it means to be an advocate, what counts as advocacy, and who is a self-advocate. What needs to and can be done and by whom.

Notions, I feel, that will mean the most for and in the future of my daughter and others with Down syndrome.

This to me says it's okay to not let all flowers bloom, especially not the flesh-eating kind. Not everyone's truth needs or should be out there. That sometimes 'turning on the community' is just healthy discussion that strengthens the movement and hurt feelings are just that.

I've thought about who the reader of this blog is and what they are taking away from what I write. I've struggled with whether everything is personal and up for discussion or whether there needs to be a clearer direction that might confront other directions. I've tried to zero in on what needs to be challenged and questioned and who is in the position to do that. Who it is I'm shouting at and who is shouting with me?

I am and have been angry and outraged and I've been told that I'm unappealing because I swear or say divisive things, and then I've wondered whether those aren't the best things about this blog.

They've meant I've found others who will rather make a wave than stay afloat. Waves are called for today. There is no reason for advocacy to be good-natured or diplomatic. Why should I change how I do things and occupy my space in the world just because I am the parent of a child with a disability?

I have also struggled with the surprisingly-present in the Down syndrome parent community, notions of legitimacy, seniority, involvement, and perceived authority or expertise. And then there are the recent additions of transparency of motivations and personal goals. I find the latter hard to fit into my view of advocacy.

Most times I think: "Fuck it, I'll write what I want."

Most times I write because I'm pissed off. For my kid. For her.

What do I want to achieve with my advocacy and how? What will I emphasize in raising my child with Down syndrome. How will I address advocacy in our everyday? Will I need to and should I?

I want people to halt when they see inspirational porn and dismiss it as insulting. I want people to read an article about a doctor having 'suppressed' the third 21st chromosome in a petri dish and ask themselves what the implications are and whether this isn't a problematic development. I want people to look at my kid and never ever flinch or ask me what her condition is or whether she's able to do xyz. I want my kid to be able to create for herself the life she wants to without anyone setting limitations on her because of her diagnosis. I want her to be able to succeed and fail without neither being perceived as somehow related to the chromosome. I want to not feel the need to write a blog about Down syndrome because I feel pissed off at the media, society, history, strangers, institutions, parents, or other advocates.

I used to bitch about the narrowing width of airplane seats for chrissakes. Those were the days.

And the most important question of all:

Why don't I write more specifically about Babe? She is totes adorbs after all. It would create awareness. It would show people that "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay," instead of me just saying it right there on the banner.

Because now, as an adult, I wouldn't want to read about my child self on the internet.

What's your take on advocacy? What about flowers, especially the flesh-eating kind? Should we be catching more flies with honey or is there a danger in imperfect alliances to further obscure the root cause of injustice? Want to discuss this over a bottle of wine?

Thursday, July 4, 2013

In my life I love. I laugh. I get angry. I get bored. I whine. I rejoice. I joke. I drink too much coffee and wine. I yell at my husband and at the computer for daring to behave differently after the latest software upgrade (the 'puter, not the husband). I dance and sing and eat burgers with gusto.

Sometimes I cry when someone's a total ass towards me and sometimes I fight back. Most times I hang out with my family and friends and just bathe in the happiness and joy.

I enjoy my life. I'm happy and content. I'm where I want and wanted to be. I enjoy my life.

Yesterday I read this article on Huffington Post about grief. It's a personal account and a parent's take on something that gets tossed around in the Down syndrome community a lot, namely 'grieving the child you thought you were going to have, to be able to enjoy the child you did get'. To me personally this exercise has always been pointless at best and incredibly insulting at worst. So I wanted to comment thusly:

"I am also a mother to a child with special needs and while I support you and understand you as a fellow parent and as a human being with a specific experience I also feel to need to bring to your attention that your experience is by no means a universal one. In fact, I often consider an experience such as yours, which is by no means invalid in any way, brought on by compliance to a rhetoric created for the mainstream, *only* for the mainstream. A rhetoric that never questions what it means to be human, what it means to have value and worth or have a valuable or a worthy life. What it means to be happy. Why we're so driven to attain a level of accomplishment, of development for our children. What is normal and how is it defined and where does the concept derive from? I know there is a whole world out there that does not define success by milestones or worth by 'closeness to normalcy'. There is love and diversity and a movement that allows for difference that doesn't define, but enhances.

I feel we cannot change things for our loved ones (or for ourselves) unless we let go of what has been arbitrarily defined and create anew. Lets change the world for our children, not our children for the world.

Much love to you and yours."

I always feel compelled to say something when it seems like a major news outlet is picking up 'a story' I and many other advocates refer to as misery peddling, when the struggle they pick up on is not the struggle for equal rights, inclusion and acceptance, but the struggle of a caregiver to get over their shock and horror at a disability. This article in Huffington Post is by no means unique, it is the latest in a long, long line of articles discussing depression, jealousy, and even thoughts of suicide when facing one's child having a disability.

I guess misery sells. I guess overcoming something insurmountable (oh please) sells. I guess someone finally being able to love a kid who (gasp) has an intellectual disability is the stuff for inspiration and appreciation of one's own life. Who knows?

But the person who wrote the story responded:

"While I appreciate your perspective, I believe that the world you speak of and hope for is a utopia of sorts and unfortunately unrealistic in present day. Without milestones as a yardstick, parents would not know whether or not their children were falling behind in things like walking, talking, etc. Those milestones signal proper development and the lack thereof signals a need for assistance such as therapy. This is not to make these children "normal" for the sake of society, it is to allow them the opportunity to grow to reach their potential - whatever that may be. For example, if a child is not identified with a neurological or physical disability and then treated quickly enough, there is a possibility that they may not be able to walk. They would certainly have value and be considered worthy of life either way, but having the ability to walk (rather than be confined to a wheelchair or walker) would arguably bring them more opportunities and and general ease throughout their lives. I'm not sure it is fair to our children to ignore societal norms - regardless of how "arbitrary" we may think they are. Until we can change the perspective of everyone in the world, the best we can do is create realistic and hopeful expectations and a loving and supportive environment for our children and the people around them. J."

I nearly passed out.

Every once in a while there's something that just leaves me completely hopeless. Leaves me wondering why I keep doing what I'm doing when one of 'my' people - fellow parents, family members of people with disabilities, and self-advocates - with me at the barricades fighting for that better, more equal and accepting world, turns out to be fighting a completely different battle.

When they are not fighting for acceptance, but to accept.

It hurts when concepts such as 'proper development', 'treating a neurological or physical disability', being 'confined to a wheelchair' and 'societal norms' are touted as facts and something that should go unchallenged. That the only body and mind worth having and the only body and mind that will give 'opportunities' in life are the kind of body and mind that have no impairments.

My child is not a project. She's my child. I don't want to try to 'fix' her to measure up to some arbitrary yardstick or adhere to some societal norm that's really baggage in disguise. Instead of saying "How high?" I want to ask "why?"

The world is my project, even if I can't change it in my lifetime, at least I'm trying to make a difference, a change for the better for everyone in the future.

Tuesday, July 2, 2013

(Should I throw in a clown nose while I'm at it? Purpose? Opposable thumbs? Scars or tattoos? Experience? A theme song like way back on Ally McBeal? Love? Some kneepads and a helmet? Resentment? Common sense? Or a winning smile?)

What are real people made of? What are stereotypes made of?

My favorite article ever written about a person with Down syndrome is titled 'People with Down syndrome can be jerks too.' To me this article and especially its title speak of great things. Although a personal story, the article offers to me a glimpse of a society that might just be able to see people with Down syndrome as individuals. As multifaceted, whole people who experience varied emotions, and whose actions are fueled by just as obscure, overt, honorable or selfish motives as yours or mine. People with agency.

Seems so simple yet it's not.

The article speaks to me of a potential for a complex inner life that is often incredulously denied people with intellectual disabilities.

That stuff that makes you justify having a hamburger for lunch even though you'd sworn to yourself that same morning that you'd get a salad and start a new life, that makes you hate your job while you're thankful for your career, or kill a spider while carrying the ladybug safely outside. That stuff that allows you to pass that guy on the street who's waving around a sign asking for money for food without batting an eye and then pay $4 for a coffee you end up not drinking. That stuff that makes you fundraise for an animal shelter while wishing that your mother in law's driver's license will not get renewed so that she can't visit so often. That stuff that makes you hate someone you desperately love.

We can all be saints or jerks, towards ourselves and towards others, sometimes in the same moment. Sometimes we act on impulse, other times we carefully weigh our options. We make small decisions in everything we do that are guided by a complex mess of everything.

Life. We neurotypicals live it and more often than not aren't asked to explain ourselves, yet the general assumption doesn't seem to be that we acted on pure instinct, or based on some all-encompassing motivation. And even if we did, most times that specific instinct or motivation won't be seen as all we have or are, as our basic existence.

However, often, almost without anyone realizing, people with intellectual disabilities are dismissed as not having that complex mess and are flattened to a few basic emotions or motivations. People with Down syndrome are reduced to that one extra chromosome in ways that most of us never even think about. Little things. Insidious thoughts. Good intentions.

Closer to God in their innocence

The 21st is the chromosome of love

Not an evil bone in the bodyUnable to tell a lieSweetness personifiedHere to teach us what life is really about

If people with Down syndrome are not reduced to monsters as has been done in the past (hello Aristotle, you half-assed theoretician), then they're often reduced to special people, halo and angel-wings firmly attached.

Reduced nonetheless.

Subhuman or superhuman, both exist on the margins or outside of society. Only partially included or segregated and grouped together, perhaps excluded. Denied of an average, everyday, mundane existence, complex mess and all - the kind of existence many of us have and refer to as happiness. Disabled by society and its perceptions.

By a society whose rhetoric of ableism has become so ingrained into us, into our thinking, our worldview, our language, and our understanding, that even many of us advocates never pause to challenge or question it.

We don't lead in our thinking and rhetoric, we scramble to have those we advocate for lie in this bed we've made without wondering when the last time was anyone changed the sheets - and those sheets are in serious need of changing.

Friday, June 14, 2013

To say that, would be unfair and dismissive of your feelings. It would suggest that my path would be your path too, when the truth is that there is no one solution. No one way.

However, what I can say is that I've been where you are now and that you are not alone.

I too was presented with a diagnosis. Mine came at 13 weeks of pregnancy, in the form of a grainy copy of FISH results from a Chorionic Villus Sampling. A couple of dots on a chart highlighted with neon-yellow. One line of text on the bottom.

I had asked the doctor about termination and my rights (we were living in Mexico) prior to receiving the specific results, and in that smallish conference room with someone's laptop charging in the corner, I was presented with a choice: My daughter had Down syndrome and I could either terminate the pregnancy or continue.

The doctor would support whatever decision we made and either organize an abortion or bring in a geneticist.

To say that there was no choice for me, would be to tell a lie. I am pro-choice. I try to live ethically and with compassion. So I weighed my options. I was happy to have a choice. An informed choice. I considered and still consider myself one of the lucky ones. Not every woman gets to decide over their own body and life. I know I'm privileged.

In the week that had passed from the ultrasound to receiving the diagnosis, I had read everything I could find on Turner syndrome, Trisomies 13, 15 and 18, Cystic Fibrosis, and Down syndrome, although I'd felt I was already somewhat aware of the realities related to the last possibility. For my husband and I there was no fear, no unknown, just a fork in the road. Together we made a decision.

We, the adamantly atheist, educated, and rather rabidly pro-choice couple, felt that life with Down syndrome was no better or worse than a life without. Our daughter's life would be what we and she made of it - good, bad, brilliant or not, only time would tell.

We had decided we wanted to have a child. For us, that child having Down syndrome did not change our intent. I had read enough to know that life could and would be good, as normal as it ever was going to be for us, strange, unprecedented, wonderful, mundane, awkward, boring, exceptional, and everything in between.

Somehow, her having Down syndrome just added to the idea of her unique existence. While we were aware of the list of potential health issues related to Down syndrome, we were even more keenly aware of the fact that life in itself came with a laundry list of potential health issues, and that no one had ever escaped living without dying. Eventually. We understood that intellectual disability and developmental delays had nothing to do with worth, value, humanity, or what it means to be happy or lead a happy life.

We still feel the same.

I will not insult your intelligence by telling you that this diagnosis doesn't change the premise of your pregnancy or try to convince you that it shouldn't. Your mind might have already gone from wanted to unwanted. What I will tell you however, before you decide one way or the other, is that you should do so only after trying to understand what it really means to have a child with Down syndrome, and more importantly, what it means to have Down syndrome, what your child's life could and would be like. Look beyond the stereotypes, the list of 'what could go wrong', and the ignorance of those who will tell you that you'll end up with a child who'll never grow up. Attempt to find the reality. It's worth it, I swear.

What I will also tell you is that I know of no better feeling than the love I have for my kid, the feeling I get when she laughs at my singing, the warmth of her hand in mine when she's reaching for something new she's not quite sure about, the pride I have in her when she trots out into the world, fearless and fierce, and makes that world hers. She is everything to me and her father. She is the coolest, most excellent person I have ever met and I doubt that'll ever change.

She is our love. In her I found the meaning of real, earth-shattering love. But only because she is mine.

Wednesday, May 15, 2013

In the past few weeks I've been told that I'm a "pearl clutcher", that I should just "untwist my panties", and that I'm being "too sensitive" when I haven't felt that insults and belittling expressions, retard and tard, should have a place in our everyday conversations. I've also been called a "fucktard" for (politely) objecting to the word "douchetard".

Nice. I know. Makes me feel all warm and fuzzy about my fellow human beings. Yup. Makes me feel heard and appreciated as a person. And makes my kid feel like a valued member of a society that cares about her. Like she's loved and appreciated, and that she belongs. Makes her feel like a part of this great adventure, and not at all like a despised outsider.

Because someone thinks that saying fucktard will get him more laughs than saying fuckdink? Or because someone feels so strongly that the person they were ripped to pieces by needs to be called a douchetard and not ever a douchecanoe? Or because a person is so unimaginative that they cannot make a Palin joke any other way than referring to her as retarded?

What is this love affair with one word? Why are people so ready to defend their use of it? If you're out to insult someone, as seems to be a popular pastime, why not get creative? Why choose the one word, in any of its permutations, that singles out an entire group of people, a group that already has it pretty damn hard in today's society, and represents the members of that group as

mistakes
slow
broken
despicable
unfortunate
disgusting
strange
funny, but not the good kind
and
less than everyone else on this earth.

Because that is the long and short of it. It is language of oppression, hate, and discrimination. It is. It does not matter how much you are not pointing at my child when you use the word, you're still demeaning her, and others who have intellectual and developmental disabilities.

It does not matter that you also have a child with a disability but are not bothered by the words unless they are directed at your specific kid. You are aiding the language machine of inequality by not speaking up and attempting to make a change.

No matter how much we wish to do so immediately, the word 'retard(ed)' and its permutations cannot yet be understood as divorced from the concept of intellectual disability. A better case can be made for former classifications: idiot, moron, imbecile, but even they now carry added meaning, at least for this mother. There is no way for the parents to 'own' or 'take back' the offending word for their children. Someday, doing that may be possible for people with I/DDs, but as for now, they're not interested.

I know there are many things that need to be done and achieved for true equality. Things that require lobbying, funding, legislation, and hours upon hours of activism and advocacy. However, I also know that a change in our everyday language, and viewing certain types of language not as "free speech" but as language of oppression and hatred will help to undercut the persisting bias to see people with Down syndrome, or any intellectual disability as not quite human enough to be worth our trouble.

Again. I'm not asking for your money or even your time. I'm not asking for you to like me, or even be considerate of me. I'm not clutching my pearls in horror and asking you to stop swearing. I'm not being the "word police" or treading on your "rights". I'm asking for the tiniest, smallest speck of respect for a huge group of people. For your neighbor, that boy in your kid's school, your sister, your colleague, the driver behind you, that girl on Glee, and for a group of people that you might one day be a part of.

This is not about my sensibilities.

Make a choice. Use language of equality. Teach your kids that language has power. Weigh your words. There may come a time someone needs to be called a giant bag of assholes, and that's just fine. Assholes won't mind. And people with intellectual disabilities will not be the butt.

Friday, May 10, 2013

Once she was born, everything else went out the window. I embarked on the greatest adventure of my life. After a half lifetime of touring the world and putting myself (and whoever was with me at the moment - hello and subsequent sorry, Viking husband) in situations that no Finn, especially one who doesn't know that opinions do not always have to be voiced out loud, or even hinted at with disapproving or otherwise eyebrows, should be putting themselves in, I became a mom.

To Babe. Who's like the bees knees, pixie dust, the bestest ever antidote to any mellow-harsh, and all of that cool stuff that I thought didn't even exist. She's the shizz and the sha-zam, and pretty much all the awesome magnificent I can think of. So ya, she's it.

Totally.

Before I had her I was one of those people who praised new moms for not letting the fact that they'd procreated change "who they were".

And I realize that is a capital offense.

Right. I apologize. I'm sorry. That's such a fucking nasty thing to assume or say. To think that what you are without children is the person you are, and should be, even after a life-altering event? I should have known better. I mean, I went about preaching how wonderful change is which just made a me a giant hypocrite. Apologies again, folks. Don't hate me. I understand now.

Of course the love of your life's going to rock you to your foundation. Change you for the better. Make you see the world in a new light, more than once each day, as a place that your sweet one will also exist and develop in. (Plug: Should you feel compelled to, now that I've apologized and everything, change the world for the better for my kid and for all people with Down syndrome, sign this petition, please.)

I now have a permanent ponytail for easiness, a back yard with actual grass and a sand box, and a red minivan with a top of the line car seat in the back seat. Rear-facing. Still. For ultimate safety.

And it's all still adventurous, and new, and something extraordinary. Every second of it.

So what I'm trying to say on this Mother's Day is that I apologize for being a childless jerk before. For not understanding that this change too that enables one to talk about poop (especially the rogue kind that makes its way into a shoe in the closet somehow), bedtime routines, and Caillou, and find those discussions fun and enjoyable (unless they're about Caillou and then the general sentiment seems to be that enuf is enuf already), is good change too.

It's not regression, or an insult to feminism. It's another adventure in a string of adventures that at least my life is made up of. Motherhood's the works, man.

Please click on the links and do the world (and my kid) a solid. Thanks.

But it's just not going to happen. There's something more pressing that's fighting its way out of my rambling mind to be put down in what will hopefully end up being a more coherent string of words than what I usually achieve.

Could happen? There's got to be a first for everything.

Today I wish to talk to you about making a change in the world. Not just how I go about it in my everyday (yup, still linking this to the Down Syndrome Uprising advocacy symposium), but how change truly happens, or actually, how I think we could be better at making it happen.

I'm sure we can all agree that the current perceptions about people with Down syndrome many folks out there have are hardly ideal. There's a lot of work to be done, sure. Lots of targeted education, legislation, and funding to deal with to make an actual change. I get that.

But I also get that we need to lead by example. We need to be the change. We need to think in a new way. We can't be bogged down by how the current society views people with Down syndrome and other intellectual disabilities.

We need to be different. We need to be advanced. We need to to think the way that we wish everyone thought. We need to stop apologizing and start taking charge. We need to be the change we wish to see.

NDSS and NDSC, I'm giving you the benefit of the doubt and will continue to believe that you actually wish for a change, although it's not exactly apparent in your behavior of late.

We need to talk the talk.

Language is key. We don't only wish for people to stop using the r-word, or Down syndrome as an insult, we wish to be so forward thinking that we get to equality with language.

We have to stop apologizing for the existence of people with Down syndrome, as if they were a population distinguishable by strange, specific to the syndrome, behaviors, and completely unknown health conditions that are never seen in the population at large.

We all, as in the people with Down syndrome and their parents, families and friends, know that there simply are no behaviors or health conditions that are purely found in relation to Down syndrome.

Maybe it's just me, but I don't want to go out there and tell my surroundings: "Hey you, expect strange with my kid, cause, you know, she's abnormal and all."

I can't believe that I have to spell this out. In 2013. Sheesh.

I'd rather go out and be all like: "Hey you, I know you might not realize that my kid is just as human as you, but she is, so treat her like you'd want yourself or your loved ones to be treated. Understand that her reactions and actions have value and stem from the specific situation and her personality, not Down syndrome, and they don't require some specific procedure to be 'dealt' with. Be a human. Communicate with her."

To put it succinctly, as I've done in a number of unanswered emails to especially NDSC (since they are the organization behind most of the quotes above), we cannot use language or perpetuate images and thoughts that stigmatize and/or marginalize people we represent further.

We have to be forward-thinking. We need to be progressive. We need to see beyond the current reality, into the future, into what should and will be. We need to realize sooner than later that a person with Down syndrome having the right to be seen as an equal member of society should not be a radical idea.

We must not shoot ourselves in the back, or in the foot, or, well, anywhere. Actually, let's keep away from shooting, period.

Let's represent. Let's be cool and let's be the change we want to see in the world. Change begins with a thought. We have to fake it till we make it. If we build it, they will come.

Saturday, April 20, 2013

If you are a parent you probably know how profoundly this thing we call love for our children also spells constant worry, guilt, fear, feelings of inadequacy, and holds close to its very core the terrifying potential for bottomless grief.

While parenting might mean eskimo kisses and early morning warm cuddles, drawings on the fridge, tiny participation awards on the mantle, soft sobs that only your arms can make disappear, intense pride and joy, laughter that plays a never-before-played chord, and boogers that kind of look like a dog (and that don't really gross you out), there are also desperate nightmares about college funds, meaningful time, birthday invitations and popularity, happiness, correct nutrition, homework, following dreams and what those dreams might turn out to be, scraped knees and elbows that could have been so much worse, turning out 'well', and much more, that often, especially late at night, can seem almost overwhelming.

But your laundry list of concerns that keep you up at night probably does not include the worry that your child will not be seen as fully human by their peers and by the society they are growing up in.

Unless your child is also part of a population that is marginalized and that there are widespread, so deeply ingrained and accepted prejudices about, that more often than not they're regarded as opinions, sometimes even as the truth. As evidenced by the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".

My child is often marginalized and dehumanized.

How does a person exist in a society as fully human, and as an equal when they are constantly told by everyone, even their own community, that they are part of a marginalized, yet homogeneous group, a group of which blanket statements and assumptions can be made and spread as expertise?

Would that situation frighten you?

It frightens me.

The world at large seeing my child as somehow too different, defective, or less than keeps me up at night. It takes me away from my family in my need for tangible change while I read yet another article on Robert Ethan Saylor and plot a better tomorrow for everyone.

But that fear of her being taken away from me is never far either. After all, we've been close to that edge once already. That fear becomes even more pronounced, at times overriding the fear of my child not being seen as fully human, especially when something like what happened to Ethan happens.

A whole community of parents, loved ones, and people with Down syndrome is shaken. Shaken to the point where many feel like something needs to be done, this mother included.

So I understand the need to grab hold of anything that somehow seems like a solution. A powerful 'if only'. Something that just might tell a terrified parent that what happened to Ethan was an isolated incident and the result of something that is amiss, but that can be easily rectified.

'Down syndrome specific training' is born.

I applaud the community for attempting, for once, to come together to address this situation. I admire anyone's fierce passion for their children, I have much in store for mine. I understand the need to make everything better, to have a goal, and to make something positive came out of a horrifying sequence of events that never should have unfolded to begin with and that continue to haunt us because in lieu of an independent investigation there has only been an internal investigation. The need to make sure Ethan's death is not in vain resonates with me. I could never disagree with a parent's love for their child and their need for safety and security for that child.

But I have to look at the bigger picture. I have to look at the repercussions of the public discourse on Down syndrome specifically and intellectual and developmental disabilities more broadly. I have to look at this training, something I normally see as a positive, as education, within the scope of the constraining and limiting 'Down syndrome specific' epithet. I have to plot in how exclusion and separation from the general population by recommendations, protocol, or legislation will affect what I wish for my daughter and all people with Down syndrome - inclusion, acceptance and equality. I need to understand what happens to prejudices and stigma, while education and training on such, in reality truly specific subjects, as 'delays in processing' or 'heart conditions' are brought under the Down syndrome condition umbrella. I need to assess how detrimental such notion as having a "Down syndrome specific interaction" or addressing "specific health and behavioral concerns associated with people with Down syndrome" will be to perceptions of others regarding the individuality of a person with Down syndrome.

I need to be true to my heart and the one who calls me mom.

Exclusion by way of creating a standard that is separate for those with Down syndrome, if that were even possible for such a diverse population, is not the kind of legacy I wish to create for my daughter, or anyone with Down syndrome. I wish to create a legacy that challenges bias, stigma, and prejudice, and that celebrates diversity while understanding that Down syndrome in itself is not diversity but that diversity is born from individuality.

The only Down syndrome specific training that I can support is training that completely challenges the existence of anything 'Down syndrome specific' and focuses on people with Down syndrome as people, as individuals, as equal members of society with equal rights. That training I will champion.

Tuesday, April 2, 2013

I don't want to write about how he cried for his mother right before he died. I don't want to write about how the people whose actions left him dead are already back at work protecting others, or selling another ticket to a movie, or looking back at that night when a life was lost while they did nothing because someone qualified was taking care of it, or because they were afraid ...of him? I don't want to write about how confused, biased, and embarrassingly void of thought, real research, and understanding the media coverage concerning his death, and his life, has been. I don't want to write about the deafening silence from those who get a salary for representing Ethan and all people with Down syndrome (never again paid by my daughter), and then, too late, filling that empty air with even emptier words. I don't want to write about agendas or people who can't come together even in death, and who bicker, or try to one-up each other in some strange game of 'Whose cause is this?', or people who look at their own child with Down syndrome and still see other, or people who don't see a problem with a police department investigating its own employees. I don't want to write about people who hide behind the anonymity of the internet to spew their venom on 'retards', unsuspecting parents, and at anyone who reads the comment section in a newspaper (you are scum and I feel sorry for you). I refuse to write just because if I don't, the Department of Justice might just think that this horror, this violation of basic human rights, this dismissal of 6 million people has blown over, because there have been some vague promises of 'training' for people, who are supposed to be protecting my daughter as an individual, on how to see her and the other 6 million exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.

I don't want to. Ethan isn't the cause of this. He isn't to blame. Neither is his Down syndrome. The blame belongs on the shoulders of those whose actions led to Ethan suffocating to death, and on a society in which a person's life is instantly deemed to be of lesser value, less worth saving, dismissible, or to have a potentially dangerous, out-of-control component, when his assumed IQ score is below 70.

Society needs fixing. Those of you who look at Ethan or my kid and don't see a person, an equal, need fixing. Adjustment. Change. You don't get to judge my daughter, I get to judge you.

Successful communication is not an effortless task. Communication takes practice, patience, compassion, and a willingness to listen and to try to understand. Communication takes years and years to learn and even then, in any given situation, at any given time, communication might fail. Even with the best of intentions on all sides.

But what if the intention, the willingness to understand, is not there? What if, instead of seeing and listening to a person trying to communicate with you, all you see is a stereotype?

He isn't small? He isn't cute? He's not smiling either? There's no belly laugh. He's not happy. He's not contained. Where is his keeper? Why is he by himself? Who let him out? He's reacting. He won't understand anything but force. Not fit to be out in public. Those can't be words. They don't understand. They don't think. Did he just say 'mom'? Nah. Couldn't have. Retard strength. Better watch out.

But what if you grew up having a friend who had Down syndrome? A student in your class? What if the lady who sells you your weekly lottery ticket and you regularly chat to had Down syndrome? What about a coworker, your boss? What if a kid in your daughter's soccer team had Down syndrome, in your son's ballet class, a guy in your aunt's book club, that lady who golfs with your sister-in-law?What if your favorite television show had a character with Down syndrome? How about the bartender at your favorite Friday-night watering hole? What if you had that Friday-night beer sitting by your friend who has Down syndrome, listening to his woman troubles or work stories, and telling him about this weird mole on your back, or how you think your car might not need all of those repairs the shop's quoting you for? What if we valued everyone, included everyone, and then let the chips fall where they may? What if we didn't assume anything, but looked at everyone as an individual?

What if people with Down syndrome really were included in every aspect of society? What if we all made an effort to understand, to communicate?

Simplistic? Maybe. A real choice? Yes.

Include. Interact. Accept. Embrace. All four are choices you can make. Today.

Monday, March 18, 2013

Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.

Disability is natural.

Down syndrome is natural.

Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.

And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.

Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.

You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.

On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.

We need to take action.

You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.

We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.

We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.

You don't have to love someone with 47 chromosomes to understand, you just have to be human.

There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.
We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'.

I chose to make it personal. About my kid, about Babe. because it very much is personal. It is about you hurting my kid and my family when you say it.

I decided to take my words and punch with them. I threatened.

Why did I choose that approach?

While I was driving yesterday a radio commercial came on, part of a campaign targeting drunk driving. The message was that it is more expensive to drive drunk if you get caught than if you just take a taxi. This approach does not and never has appealed to me. I'm the person who talks back to the radio and says "Forget about money, what if you kill someone by accident, what if you hurt someone? Ever think about that?" or something like that, usually probably peppered with some 'fuck' and 'fucking' in there too. Because that is the approach that appeals to me. Not just the swearing though, the caring about others and about not hurting people.

I'm not overly shaken by the thought of a huge fine. It's only money.

I'm not overly shaken by the thought that I will get hurt myself if it's the direct consequence of my own bad choice. I'm an adult, I make my own choices, I live (or not) with the consequences. I usually instinctively try to stay alive and thus don't normally even contemplate driving drunk.

I am, however, very shaken by the thought of hurting someone who I don't know, whose only mistake is not taking into account that a complete stranger can't be bothered to think things through and put themselves in other people's shoes and consider how their bad choice could affect an innocent bystander.

This is not the first time I've heard the financial loss approach to drunk driving so there must an audience out there for it. I get it. It must hit home with some people. Good for them for not driving drunk, even if they're not worried about killing their neighbor, but having to work overtime because of a monstrous fine. Whatever works.

Whatever works? Really?

This has made me think of this whole blogging thing I'm doing here, and the way that I'm doing it. About writing about Down syndrome as a point of advocating for people with Down syndrome, or with other intellectual or developmental disabilities. Blogging to make a point instead of processing something, or recording something, or even rejoicing in something. I have moved on from awareness. Awareness is no longer doing it for me, or for Babe.

We need more. We need it all.

I don't just blog for awareness, I blog for complete acceptance and for real, meaningful inclusion of people with Down syndrome in our society. I blog to level the playing field. I blog about Down syndrome to change perceptions, to find others who think alike so that together we can be stronger, to make the world better for Babe and for everyone with Down syndrome. I take my kid to the park so that she can enjoy the fun that is gazillion screaming toddlers and I blog about Down syndrome so that she can be in an inclusive setting in a classroom once she goes to school and not be marginalized as 'too different from the rest of us'.

I don't want to journal and I don't want to show you what our life is really like. I want to change you for the better or if you've already arrived I want to be your friend.

I want a life for my kid that is in no way made harder by false impressions of Down syndrome and people with Down syndrome.

About Me

A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.